METUPUK is the ONLY patient advocacy group in the UK.
We are here to push and promote issues with secondary/metastatic breast cancer. Our objectives and strategy focus on the key areas that need to change.
Charities and healthcare professionals are starting to listen to us and they are helping to implement changes in many of the areas we have highlighted to them. Which is great, but there is still so much more to do.
Our main concern is the fact that those diagnosed have a 2-3 year median life expectancy, which is an unacceptable outcome. We believe we can turn metastatic breast cancer into a chronic disease.
The patient voice is at the core of everything we do – we are the patients who are #BusyLivingWithMets
We are volunteers who are paid no salary or renumeration for the work we do.
We strive to make change and this is happening.
Please support us in achieving our aims and objectives.
Help to keep us enjoying life and #BusyLivingWithMets
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METUP was created in America to change the landscape of metastatic cancer through patient advocacy and direct action.
I’d followed one of the founders, Beth Caldwell from Seattle, on social media for a number of years. I was impressed with the work they were doing and believed we needed the same here in the UK. We were being let down and ignored.
I finally met Beth when she visited London in 2016. I asked if we could create a METUP here in the UK and happily, she agreed. METUPUK was born.
Our disease is incurable and the median survival rate is only 2 to 3 years. Beth campaigned tirelessly to improve our outcomes until her death in 2017.
It was a privilege to know her and her passion was inspirational. Her legacy and voice live on.
We are making HERstory.
My determination to invoke much-needed change is borne out of the frustration and anger of being in the middle.
I have had treatment and currently have no evidence of active disease. But this doesn’t mean I’m cured.
Metastatic breast cancer can never be cured. Many of us are not actively dying we are #BusyLivingWithMets.
At METUPUK we focus on making positive changes for all those with metastatic breast cancer. We are continually growing in strength and numbers as more patients join our group.
We are campaigning for awareness of red flag signs and symptoms, access to drugs and treatments, access to clinical trials, and pushing policy to change for the better.
We are slowly getting there and issues are being addressed.
NHS England signpost to my red flag symptoms infographics for use in their personalized care plans for primary patients. We are also looking at clinical trials to see what we can do to improve access.
In addition, we’re pushing for one database for patients and clinicians where we are counted using data and statistics.
Why are we doing this?
Metastatic Breast Cancer (MBC) is when the cancer has travelled from the primary breast site through the blood or lymphatic system to a distant area of the body.
When this happens, it is now Stage 4 cancer and is an incurable disease. Amongst those diagnosed with early stage Breast Cancer, approx 30% will go on to develop MBC.
Some people will discover at primary diagnosis that their cancer has already travelled, this is known as de-novo.
Women are predominately affected by MBC, but men can also be diagnosed.
The most common travel sites are to the lungs, liver, bones and brain, however it can spread to other areas of the body.[1] The average life expectancy with a MBC diagnosis is 2 – 3 years.[2]
One of the key challenges with MBC is the fact we are not informed about signs and symptoms, so are often not diagnosed until it’s too late.
“Complications can occur with any operation and we are advised of these small % risks. We are fully informed and it’s explained you may die, BUT you are TOLD about every possible issue – yet even though MBC affects so many people, and has such a poor prognosis, we are not even advised of red flag symptoms”.[3]
MBC exists in the shadows of the Pink Ribbon campaigns. Many ‘survivors’ run races to raise funds for awareness in the belief they are ‘cured’. Although around two thirds of people will go on to live long lives, around one third will face MBC[4].
We are in fact living in ignorance.
The figures cited above are based on current estimations as there is no accurate national data to reflect the actual impact of MBC across the UK. Thanks to this, treatment pathways are limited.
Funding for MBC research falls far short of the amount allocated to Primary Breast Cancer. We question this disparity.
METUPUK believes in aligning with national and international key partners to share information, lobby decision-makers and publicise information and findings.
This will generate equitable access to advanced treatments and trials. People affected by MBC will be treated as living well with a chronic illness for as long as possible and will no longer be in the shadows.
There are many committed and active organisations[5] working to improve the lives of people affected by breast cancer, yet very few are specifically working in the context of metastatic disease. [6] A localised breast cancer will generally not take a life – MBC will inevitably take a life.
At METUPUK our experience is that the general population are largely unaware of MBC and the people affected by it are a hidden population.
We want to challenge the status quo. We will promote equity of access to treatments and trials while raising awareness without raising fear.
We will strive to improve quality of life for those who are diagnosed with MBC. Our key objectives are as follows:
Raising MBC Awareness and Education
Campaigning for equitable access to treatment and drugs
Improve Patient Care and Treatment
[1] Definition – MBC known also as Secondary Breast Cancer (SBC)– spread of breast cancer from primary site of breast (if detected) to distant parts of the body – lungs, lives, bones, brain, lymph nodes which is incurable at the present time. Also known as ABC (Advanced Breast Cancer)
[2] See ABCD Lobular Infographic
[3] Jo Taylor – abcdiagnosis quote
[4] Breast Cancer Now figure
[5] Breast Cancer Now for example.
[6] Secondary 1st, Second Hope, Make 2nds Count